Adherence to Disease-Modifying Therapy in Multiple Sclerosis: Part II

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Practice Manangement Adherence to Disease-Modifying Therapy in Multiple Sclerosis: Part II Nancy Holland, EdD RN Phyllis Wiesel, BSN RN Pamela Cavallo, MSW CSW Clayton Edwards, MBA RPh PAHM June Halper, MSN ANP FAAN Rosalind Kalb, PhD Linda Morgante, MSN RN CRRN Marie Namey, MSN RN Margie O'Leary, MSN RN Lori Smith-Williamson, MSN RN C-ANP Multiple sclerosis (MS) is a chronic, debilitating disease for which there is no cure; however; the recent introduction of in- jectable immunomodulating agents has reduced the rate of relapsing episodes and possibly slowed the progression of the disease. These disease-modifying agents are recommended by the National MS Society, but their true potential cannot be re- alized if patients do not accept them and healthcare profes- sionals do not promote them. Since MS has an unpredictable course, and treatments can produce side effects, adherence to the recommended therapy is a complex and challenging issue. Improved understanding of the obstacles to adherence and the identification of possible solutions should be of value to nurses, who have numerous opportunities to encourage pa- tients to initiate and continue therapy. Part I of this article, published in the September/October 2001 issue ofRehabilita- tion Nursing, described the particular problems of treatment adherence in MS. Part II proposes that the transtheoretical model of behavior change can be a useful tool in achieving both patient acceptance and treatment goals. This model is founded upon the concept that readiness for change is cial, and that attempts at intervention should be sensitive to the patients' changing conditions and states of mind. The introductionin the early 1990s of disease-modifyingagents heralded a new era in the pharmacologic treatment of multiple sclerosis (MS). But the true potential of these agents can only be realized if patients take advantage of them. Adherence to the rec- ommended injectable therapy is a complex and challenging issue that was discussed in Part I of this article. Part II explores two means of optimizing patients' adherence to therapy. We describe how a supportivepharmacy benefits program meets patients' needs and we applythe transtheoretical model of behavioral change to MS. This model matches the patient's readiness for change to specific interventions that can be used by rehabilitation nurses who work with patients with MS and other chronic diseases. A program with 'Positive Approaches' Research has shown that adults change their behaviors when they can see that such change will benefit them and if they are confident that they can do so successfully (Center for the Keywords immunomodulating agents, medication adherence, multiple sclerosis, transtheoretical model of behavior change Nancy Holland is vice president of the Clinical Programs De- partment at the National Multiple Sclerosis Society's home of fice in New York City. Phyllis Wiesel is a former director of clinical services at the New York City chapter of the National Multiple Sclerosis Society. Pamela Cavallo is a director emer- itus of Clinical Programs Department of the National Multiple Sclerosis Society. Clayton Edwards is the director of health management at Merck-Medco Managed Care, UC, in Mont- vale, NJ. June Halper is the executive director of Gimbel MS Center in Teaneck, NJ. Rosalind Kalb is the director of Infor- mation Resources at the National Multiple Sclerosis Society. Linda Morgante is the director of clinical services at the Mai- monides Medical Center in Brooklyn, NY. Marie Namey is an advanced practice nurse at The Mellen Center of the Cleve- land Clinic Foundation in Cleveland, OB. Margie O'Leary is a clinical nurse at the University of Pittsburgh Medical MS Center in Pittsburgh, PA. Lori Smith- Williamson is a nurse practitioner at Drs. Cochran, Eberly & Howe, PC, in Alexan- dria, VA. Address correspondence to Nancy Holland, EdD RN, National Multiple Sclerosis Society, 733 Third Avenue, New York, NY 10017, or e-mail [email protected]. Advancement of Health, 1999). According to von Korff, Gro- man, Schafer, Curry, and Wagner (1997) at Group Health Co- operative of Puget Sound, the three most essential elements of effective self-management intervention are (a) teaching patients to manage their illness as well as they can; (b) tailoring pro- grams to individuals and offering ongoing professional sup- port; and (c) regular follow-up of patients over time. It is the task of nurses, pharmacists, and other allied health personnel to develop strong educational interventions and to combine them with a supportive presence, to have the greatest impact on treatment adherence. These strategies are the foundation of the Positive ApproachesTM program at Merck-Medco Managed Care, LLC, a nationwide pharmacy benefits manager. Merck-Medco has ed- ucated more than 16,000 persons with MS to stay adherent to disease-modifying agents by offering consistent support through pharmacists who are trained to administer the program. It is a Rehabilitation Nursing > Volume 26, Number NovlDec 2001 221

Transcript of Adherence to Disease-Modifying Therapy in Multiple Sclerosis: Part II

Practice Manangement

Adherence to Disease-ModifyingTherapy in Multiple Sclerosis: Part II

Nancy Holland, EdD RNPhyllis Wiesel, BSN RNPamela Cavallo, MSW CSWClayton Edwards, MBA RPh PAHMJune Halper, MSN ANP FAANRosalind Kalb, PhDLinda Morgante, MSN RN CRRNMarie Namey, MSN RNMargie O'Leary, MSN RNLori Smith-Williamson, MSN RN C-ANP

Multiple sclerosis (MS) is a chronic, debilitating disease forwhich there is no cure; however; the recent introduction ofin­jectable immunomodulating agents has reduced the rate ofrelapsing episodes and possibly slowed the progression ofthedisease. These disease-modifying agents are recommended bythe National MS Society, but their true potential cannot be re­alized if patients do not accept them and healthcare profes­sionals do not promote them. Since MS has an unpredictablecourse, and treatments can produce side effects, adherence tothe recommended therapy is a complex and challengingissue. Improved understanding of the obstacles to adherenceand the identification ofpossible solutions should be ofvalueto nurses, who have numerous opportunities to encourage pa­tients to initiate and continue therapy. Part I of this article,published in the September/October 2001 issue ofRehabilita­tion Nursing, described the particular problems of treatmentadherence in MS. Part II proposes that the transtheoreticalmodel of behavior change can be a useful tool in achievingboth patient acceptance and treatment goals. This model isfounded upon the concept that readiness for change is cru~cial, and that attempts at intervention should be sensitive tothe patients' changing conditions and states ofmind.

The introductionin the early 1990sof disease-modifyingagentsheralded a new era in the pharmacologic treatment of multiplesclerosis (MS). But the true potential of these agents can only berealized if patients take advantage of them. Adherence to the rec­ommended injectable therapy is a complex and challenging issuethat was discussed in Part I of this article. Part II explores twomeans of optimizing patients' adherence to therapy. We describehow a supportivepharmacybenefitsprogram meetspatients' needsand we applythe transtheoretical modelof behavioral changetoMS.This model matches the patient's readiness for change to specificinterventions that can be used by rehabilitation nurses who workwith patients with MS and other chronic diseases.

A program with 'Positive Approaches'Research has shown that adults change their behaviors when

they can see that such change will benefit them and if they areconfident that they can do so successfully (Center for the

Keywordsimmunomodulating agents, medication adherence, multiple

sclerosis, transtheoretical model of behavior change

Nancy Holland is vice president of the Clinical Programs De­partment at the National Multiple Sclerosis Society's home office in New York City. Phyllis Wiesel is a former director ofclinical services at the New York City chapter of the NationalMultiple Sclerosis Society. Pamela Cavallo is a director emer­itus ofClinical Programs Department ofthe National MultipleSclerosis Society. Clayton Edwards is the director of healthmanagement at Merck-Medco Managed Care, UC, in Mont­vale, NJ. June Halper is the executive director of Gimbel MSCenter in Teaneck, NJ. Rosalind Kalb is the director ofInfor­mation Resources at the National Multiple Sclerosis Society.Linda Morgante is the director ofclinical services at the Mai­monides Medical Center in Brooklyn, NY. Marie Namey is anadvanced practice nurse at The Mellen Center of the Cleve­land Clinic Foundation in Cleveland, OB. Margie O'Leary isa clinical nurse at the University of Pittsburgh Medical MSCenter in Pittsburgh, PA. Lori Smith- Williamson is a nursepractitioner at Drs. Cochran, Eberly & Howe, PC, in Alexan­dria, VA. Address correspondence to Nancy Holland, EdDRN, National Multiple Sclerosis Society, 733 Third Avenue,New York, NY 10017, or e-mail [email protected].

Advancement of Health, 1999). According to von Korff, Gro­man, Schafer, Curry, and Wagner (1997) at Group Health Co­operative of Puget Sound, the three most essential elements ofeffective self-management intervention are (a) teaching patientsto manage their illness as well as they can; (b) tailoring pro­grams to individuals and offering ongoing professional sup­port; and (c) regular follow-up of patients over time. It is thetask of nurses, pharmacists, and other allied health personnelto develop strong educational interventions and to combinethem with a supportive presence, to have the greatest impacton treatment adherence.

These strategies are the foundation of the PositiveApproachesTM program at Merck-Medco Managed Care, LLC, anationwide pharmacy benefits manager. Merck-Medco has ed­ucated more than 16,000 persons with MS to stay adherent todisease-modifying agents by offering consistent support throughpharmacists who are trained to administer the program. It is a

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Table 1. Pharmaceutical Support Programs

program that illustrates the value offrequent, supportive contactbetween patients and the multidisciplinary healthcare team.

After Merck-Medco is notified that an injectable prescrip­tion has been filled, it sends information to the patient and to thepatient's physician. Two weeks later, a pharmacist makes thefirst counseling call to the patient. Six weeks after the initial pre­scription is filled, the patient is called a second time, and thiscall is followed by a third call 8 weeks after initiation.

Patients with questions are encouraged to call the pharma­cist directly. Many patients are concerned about medication sideeffects, and pharmacists work with them to develop treatmentand prevention plans. The program's concept is based on part­nering with the patient, communicating with the physician, andproviding accurate information to all concerned.

Pharmacists monitor the patient's prescription requests and arealert to a 2-week gap in therapy. The pharmacist will call the pa­tient and initiate a discussion. Many patients who stop therapybegin it again after discussions with the pharmacists.

Pharmaceutical supportprograms: The manufacturers ofBetaserons', Avonex®, and Copaxone® each-has an adherencesupport program (Table 1) and report positive results in in­creasing adherence or persistence. Some results have alreadybeen published (Madonna & Keating, 1999).

A model for adherencePatients' attitudes and beliefs are dynamic, as are their med­

ical and personal situations and, consequently, their acceptancelevels can change over time. Healthcare providers can interveneat any point to encourage them to accept or adhere to treatments.

The transtheoretical model of behavior change is useful indeveloping strategies to encourage the continued use of disease­modifying agents in MS (Prochaska, Redding, Harlow, Rossi,& Velicer, 1994). This model, which has been used to facilitatechange in several other chronic disease states (Cassidy, 1999), de­scribes the process of change as long-term and dynamic; it in­corporates individual variables and acknowledges that patientsmove through stages of change, not always in a linear manner.

Hersen, Eisler, and Miller (1992) contend that individualspass through five stages as they incorporate lifestyle changes.These stages-precontemplation, contemplation, preparation,action, and maintenance-help explain when shifts in attitudes,intentions, and behaviors occur. Most persons do not move inan orderly manner through these stages, but rather rotate throughthem, leaming from their experiences each time.

In this model, change does not happen suddenly, because in­dividuals experience ups and downs while deciding to alter theirhabits; people learn in different ways, and sometimes they fail in

Betaseron Pathways

Avonex MS Active Source

Copaxone Shared Solutions

800/788-1467www.betaseron.com

800/456-2255www.avonex.com

800/887 -8100www.copaxone.com

their endeavors. The model contends that readiness to change ismore strongly related to improvement and the development ofa therapeutic alliance than to the specific type of treatment. Thetranstheoretical model of change, therefore, can help nurses and .other allied health personnel determine the appropriate time toencourage therapy and can then help direct educational inter­ventions (Table 2).

The idea is to match the educational intervention-in MS, thepromotionofdisease-modifyingtreatment-to the individual's stageofchange. For the best chance ofsuccess, healthcare providers, forexample, will not use action-oriented techniques such as a demon­stration of injection methods, with patients who are still only con­sidering their treatment options. The challenge is to find the mosteffective message for a given patient's stage ofchange.

How the stages of change apply to MSA participant at the Adherence Workshop at the National MS

Society in New York City shared a story that illustrates the needfor healthcare providers to appreciate the patient's perspectiveand his or her readiness to change. A bright, well-educated pa­tient had been attending the MS Center for many years and hadshown a fairly rapid disease progression for some time. Whenbeta interferon became available, her physician strongly en­couraged her to use it in her treatment, but she repeatedly de­clined. Six years later, when she had essentially lost the use ofall four limbs, she finally admitted, "I am concerned about theuse of my hand. I think I need to get on medication." Educationand support had been offered to this patient many times, but onlywhen she personally became alarmed was she ready to accepttreatment. Education, encouragement, and support were not, inthemselves, sufficient motivators.

Precontemplative stage. Persons who are newly diagnosedwith MS are not contemplating a behavior change and do notnecessarily make changes in lifestyle just because of the diag­nosis. Just as people with other chronic illnesses, most peoplewith MS are in this precontemplative stage when they first in­teract with healthcare providers. They may deny the need fortherapy at such an early stage of their illness. Patients may alsohave been led to have an unrealistic hope for a benign course.Intervention is aimed at exploring patients' understanding ofMS, their personal beliefs about therapy, and their perceived ob­stacles to starting or continuing therapy. Healthcare providersshould use transpersonal techniques to better appreciate whatnot walking, for instance, actually means to the individual. Theresult should be an increased awareness about the disease andan understanding of personal barriers to optimal care.

To move into the contemplative stage, patients must be giv­en accurate information about treatment benefits. They must re­alize that MS may be progressive, despite the absence of clini­cal symptoms, but that it is no longer an untreatable disease. Atthis point, fears-such as a fear of needles---can be addressedand reassurances given. Efforts are made to alter the patient'sperception of negative experiences, but healthcare providersmust avoid the temptation to give the patient too much infor­mation at the first consultation.

Contemplative stage. Persons in the contemplative stagearenow considering therapy but have some ambivalence and are

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Table 2. Transtheoretical Model of Change and Sustained Use of MS Disease-Modifying Protocols

Patient Attitude

Precontemplative Stage Contemplative Stage Preparation Stage Action Stage Maintenance StageA. Individual is unaware Individual is actively Individual expresses Individual engages in Individual continues

of, or unconcerned considering therapy determination to ini- administration of therapy indefinitelyabout, benefits of (initiationor resump- tiate or resume thera- therapy. unless serious sidetreatment with dis- tion), though may be py; plans to take effects develop, se-ease-modifying somewhat ambivalent; action within the next vere relapses occur,agents, particularly i.e., patientmay plan to month. the disease rapidlyearly intervention. start therapy within 6 progresses, or more

B. Individual denies per- months, or, for exam- effective therapysonal need for thera- pie, in the summer becomes available.py, e.g., "I don't need when the children aretreatment yet," "I away at camp.have benign MS," etc.

Healthcare Intervention

A. Explore the individ- A. Provide information A. Address details of A. Have nurse available Healthcare team con-ual's understanding of about the process of initiating or resuming to answer questions tinues support andMS, personal beliefs initiating or resuming therapy; e.g., call the and address con- periodic follow-up.about therapeutic therapy, anticipated physician, nurse, cerns.agents, and obstacles benefits, limitations, pharmaceutical assis- B. Provide proactiveto initiation of contin- and potential side tance program, insur- follow-up and ongo-uation of treatment. effects. ance plan, or ing high level of

B. Use information, such B. Initiate follow-up to prescription plan. support.as National MS Soci- continue support and B. Establish most conve-ety Consensus State- answer questions. nient time for admin-ment, to address edu- istration of therapy.cational and personal C. Enlist help from fam-barriers to initiation ily member, carecontinuation, or re- partner, or friend ifsumption of therapy. physically necessary

C. Validate fears such or emotionally helpful.as dislike of needles. D. Provide ongoing sup-

D. Modify impression port to individual.that MS is an "un- E. Help the patienttreatable disease." develop a personal

support network.

Outcomes

A. Individual is able to A. Individual is able to A. Plan of action is de- A. Individual commits A. Individual continuesarticulate understand- describe process of veloped and initiated. to remain in therapy therapy indefinitelying of his or her own therapy and potential B. Individual is able to for 6 months unless or as indicated by theMS disease state and benefits and side move to Action physician discontin- physician.personal barriers to effects. Stage. ues it or side effectstreatment. B. Individual is able to are intolerable.

B. Individual is able to move to Preparationmove to Contempla- Stage.tive Stage.

Note. MS patients may move back and forth between these stages and re-enter the system at any point.

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more open to feedback than they were in the precontemplativestage. They may express a willingness to begin therapy, but haveno plans to do so within the next month. Again, information isimportant at this time, with the focus being on the anticipatedbenefits of treatment, the risks associated with no treatment, anda clarification of the patient's goals. The person with MS cannow describe the treatment process and its consequences andcan move to the preparation stage.

Preparation stage. In the preparation stage,patients expressdetermination to initiate or resume therapy within the next month.Healthcare providers, at this point, should address the details ofthe treatment protocol, establish the most convenient injectionschedule for the patient, involve the physician, nurse, pharma­ceutical assistance program or insurance plan as needed, and en­list assistance from family or friends, if necessary. The aim is to

The idea is to match the educationalintervention-in MS, the promotion ofdisease-modifying treatment-to the

individual's stage of change.

develop together a treatment plan that is acceptable to the pa­tient, to establish a support network, and to enable the patient tomove into the actionstage.

Actionstage. People in the action stagehave begun to engagein therapy with a disease-modifying agent, with initial supervisionfrom their healthcare providers. They have, ideally, made a com­mitment to remain in therapy for 6 months unless their physiciandiscontinuestreatment,or sideeffectsare intolerable.Nurses shouldbe available to these individuals to address concerns, help solveproblems, and provide continuing support. Frequent phone con­tact is an important tool at this stage. Shaver-Leforte (1999) foundnearly 100% early compliance when patients received an initialformal education program, side effect management via telephonecontact with nurses, and 6-7 additional phone calls during the firstfew monthsof treatment(Shaver-Leforte, 1999).In the words of onenurse, ''Training plus trust equals triumph!'

Maintenance stage. During maintenance, individuals attemptto adhere to their commitment to treatment. Ideally, they will con­tinue on injectable therapy indefinitely unless serious side effectsappear, severe relapses occur, the disease progresses rapidly, ormore effective therapy becomes available. Patients must receivecontinued support and periodic follow-up. When relapses occur,nurses should once again determine the patient's stage of readi­ness to change and take action that is appropriate for that stage.

Whatever the patient's stage of readiness, it is crucial fornurses to realize the value of fostering a trusting and consistentnurse-patient relationship. We believe that a patient who feelstruly connected with the nurse will be much more likely to co­operate in setting and achieving goals.

Case stUdyJane is a 35-year-old woman who was recently diagnosed with

relapsing-remitting MS. Jane's neurologist recommended that shebegin treatment with an immunomodulating agent; he described

224 Rehabilitation Nursing s Volume 26, Number 6· Nov/Dec 2001

the benefits of the therapy, as well as treatment regimen. He di­rected his MS nurse, Lois, to work with Jane, who was then sched­uled to return in a week with her husband for further educationand discussion.

During that visit, Lois encouraged the couple to freely ex­press any thoughts, concerns, and questions about Jane's ill­ness and the recommended therapy. Jane admitted that she wasstill trying to accept that she had a chronic illness and was notready to think about treatment, especially since she was cur­rently feeling well and could not see the need-a thought echoedby her husband. Furthermore, Jane expressed several fears andmisgivings about injectable treatment, especially a fear of nee­dles, a fear of side effects, and a hesitancy to adjust her week­ly schedule to accommodate treatment-related demands.

Lois acknowledged their feelings and concerns. She answeredtheir questions and arranged to call them in a month.

During that telephone conversation, Lois learned more aboutJane's lifestyle and further explored her concerns about start­ing treatment and her expectations of its benefits. She provid­ed more details about the treatment benefits, limitations, regi­men, and possible side effects. Lois described the particularsof the three therapy agents and reiterated the need to begin treat­ment while Jane was relatively healthy.

Jane then confided that her experiences with doctors had notbeen positive, causing her to now mistrust them; she feared shewould be left alone to cope with any problems arising from thetreatment regimen. Jane's candor gave Lois an opportunity toreassure her and to make further efforts to gain her trust and co­operation. After the call, Lois mailed Jane more information,plus a videotape about the immunomodulating agents, askedthat she review the materials and compile a list of questions.

Two weeks later, Jane had decided to begin therapy withAvonex, although she was not willing to establish a starting date.At this third visit, Lois began training Jane in self-injection tech­niques; she also began to develop an injection schedule, and dis­cussed ways to minimize any side effects from the agent. Shealso explained the pharmaceutical assistance program and howto make arrangements to participate in it.

The next week-6 months after she was initially diagnosed­Jane began treatment. Lois supervised her first self-injection andcalled her several times in the first week. She counseled Jane onways to manage flu-like symptoms and generally provided emo­tional support. Within the first 2 months of treatment, in fact,Lois called Jane at least once a week.

, Now, 8 months after being diagnosed as having MS, Jane iscontinuing her self-injections without problems and appears con­fident that she is doing all she can do to control her disease course.

Realistic expectations and the power of hopeIn discussing MS with patients (Table 3), healthcare providers

must walk a fine line between being too optimistic and beingoverly harsh in predicting the course of the disease. As one nursesaid, "We are very upbeat in our approach to the newly diag­nosed. Maybe we do too good ajob at alleviating fear."

"We are so busy being supportive and optimistic that some­times the message of how terrible this disease can be is not get­ting through," said a participant in the National MS Society

Table 3. Tips for Facilitating Adherence to Treatment in MScaring and hopeful fashion. One ap­proach is that of planning for theworst while hoping for the best.Hope facilitates the passage fromsuffering to a new existence that hasbeen labeled the reformulated self.This is the "self' that can set newgoals and become a better person(Morgante, Halper, & Holland,1997; Morse & Penrod, 1999).

Hope not only carries patientsthrough each day, it facilitates ad­herence to treatment. When nursesshare their own hopes that therapywill give persons with MS a betterchance for long-term health, patientsborrow from their strength. Shouldpatients deteriorate and their hopefor a future without disability bechallenged, nurses can help them re­frame their options within a contextof education and realistic expecta­tions. Patients can maintain a feel­ing of being in control of their livesand can regain a state of hopeful­ness. Ongoing nursing support helpsto sustain this intangible and verycrucial component ofcaring for per­sons with MS.

ReferencesCassidy, c.A. (1999). Using the transtheoretical model to facilitate behav­

ior change in patients with chronic illness. Journal of the AmericanAcademy ofNurse Practitioners, 11,281-287.

Center for the Advancement of Health (1999). Patients as effective collab­orators in managing chronic conditions. New York: Author.

Hersen, M., Eisler, R.M., & Miller, P.M. (Eds.). (1992). Progress in behav­ior modification. Sycamore, IL: Sycamore Publishing Co.

Kurtz, K.F. (1970). Neurologic impairment in multiple sclerosis and thedisability status scale. Acta Neurologica Scandinavica, 46,493-512.

Madonna, M., & Keating, M. (1999). Multiple sclerosis pathways: An in­novative nursing role in disease management; Journal of NeuroscienceNursing, 31,332-335.

Morgante, L.A., Halper, J., & Holland, N.J. (Eds.). (1997). Comprehensivenursing care in multiple sclerosis. New York: Demos Vermande.

Morse, J.M., & Penrod, 1. (1999). Linking concepts of enduring, uncertain­ty, suffering, and hope. Image: The Journal of Nursing Scholarship,31(2),148-150.

Pane1ius, M. (1969). Studies on epidemiological, clirrical and etiological as­pects of multiple sclerosis. Acta Neurologica Scandinavica, 45(39), 1-82.

AcknowledgmentsThe authors thank Caroline Hel­

wick for her help with manuscriptpreparation.

This article, and the workshop itreflects, were underwritten by an unrestricted educational grantfrom BIOGEN Laboratories.

• Commit to developing a caring relationship with the patient and to understanding the patient'sperspectives and needs.

• Recognize the patient's readiness to change and match arguments in support of treatment ac­cordingly.

• Don't present all the information at the initial diagnostic visit. Build trust, provide a protectedenvironment for discussion, and sense when the time is right for honest discussion.

• Foster an appreciation that initiating or continuing on treatment is doing something abouttheir disease, and not giving into it.

• Assess the patient's learning style, lifestyle, abilities, and concerns so that the choice of theinitial disease-modifying agent is appropriate.

• Choose terminology carefully; use positive phrases to help alter negative perceptions.• Provide simple, understandable, and complete written instructions of the treatment regimen.• Assess concomitant medications to avoid drug-drug interactions.• Try to prevent side effects that will influence maintenance: Start with low doses of agents and

build up gradually to prescribed doses; use prophylaxis for flu-like symptoms; encourage ro­tation of injection sites.

• Encourage strong and trusting patient-provider relationships and a supportive clinical settingwhere patients are not "rushed through."

• Be alert to patients who appear discouraged and give them extra support and encouragement.• Be attentive to the patient's family members, so that they will support and not undermine the

patient's treatment.• Train a family member or friend to do the injections so they can give weary patients a break

from self-injections.• Encourage patients to join support groups and other activities that combat isolation.• Take advantage of pharmaceutical company-funded patient support programs and use direct

drug delivery from the pharmacy when this adds to convenience.• Intervene early and repeatedly.• Follow-up with regular contact.• Foster hope and a sense of what may be possible.• Respect the patient's right to refuse treatment.

workshop. "Patients think, 'If I'm probably not going to getworse, why should I undergo this difficult treatment?' "

The issue is balance: how to resolve the seemingly contra­dictory issues that exist within a very unpredictable disease. Onone hand, there is the need to foster encouragement and hopefor the best; on the other, there is the need to convince patientsof the benefits of early treatment and of the value in preparing forthe possibility offuture disability, despite the disease being large­ly invisible. The most recent data indicate that, for most personswith MS, the question is more when will disability occur, ratherthan whether it will occur. Most longitudinal studies have foundthat by 15 years after diagnosis, 50% ofpatients require assistancein walking (Runmarker & Andersen, 1993; Weinshenker et al.,1989). Panelius, however, found this figure to be 76% (Panelius,1969). Furthermore, Kurtzke (1970) noted that more than 80%of patients can be considered, in general, to be moderately dis­abled after 15 years.

Patients who accept unrealistic projections by healthcareproviders feel betrayed when the unexpected happens. Itis essential, therefore, to share honestly with patients, but in a

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Adherence to MS Therapy

Prochaska, 1.0., Redding, C.A., Harlow, L.L., Rossi, J.S., & Velicer, W.F.(1994). The transtheoretical model of change and HIV prevention: Areview. Health Education Quarterly, 21(4),471-486.

Runmarker, B., & Andersen, O. (1993). Prognostic factors in a multiplesclerosis incidence cohort with twenty-five years of follow-up. Brain,116, 117-134.

Shaver-Leforte, N. (1999, May). Patient compliance: A result of educationand follow-up-Nursing perspective. Poster session presented at theConsortium of MS Centers Conference, Kansas City, MO.

von Korff, MJ., Gruman, J., Schaefer, J., Curry, S.J., & Wagner, E.H.(1997). Collaborative management of chronic illness. Annals ofInternalMedicine, 127, 1097-1102.

Weinshenker, B.G., Bass, B., Rice, G.P., Noseworthy, J., Carriere, W.,Baskerville, J., & Ebers, G.C. (1989). The natural history of multiplesclerosis: A geographically based study. 1. Clinical course and disabili­ty. Brain, 1/2, 133-146.

Adolescent Brain Injury Toolcontinued from page 215

Continuing education (CE) articlesdis­cuss current trends and issues affecting re­habilitation nursing. This CE offering(code number RNC-186) will provide 1contact hour to those who read this articleand complete the application form on page251. This independent study offering isappropriate for all rehabilitation nurses. By reading this ar­ticle, the learner will achieve the following objectives:1. Describe the transtheoretical model for change.2. Relate the transtheoretical model to the stages of people. newly diagnosed with MS relative to initiation/mainte­

nance of immunomodulating therapies.3. Explain the role of hope in the nursing model of inter­

vention regarding the transtheoretical model ofchange.

The tool had its first trial with a 15­year-old female patient admitted with adiagnosis of traumatic brain injury. Sheentered the program with a rating of 4 andprogressed to a rating of 2. There wereno patient injuries, staff injuries, at­tempted escapes, or escalation of inap­propriate or unsafe behavior during thisadmission stay.

While developing the tool, it becameevident that additional equipment wouldbe required to support its success. En­closed beds were purchased in an attemptto decrease or eliminate the use of ex­tremity restraints. A hand-held radio setwas made available to enable the one-to­one caregiverto maintain continuouscon­tact with the unit during chase in the event

of an escape attempt. Portable dooralarms were purchased for high-flight­risk patients who did not require the con­tinuous observation of one-to-one staff.

Hospital administration positivelysupported these effortsfor the safetyman­agement of this unique patient popula­tion. Since their trial, the scale and guide­lines have been used successfully on alladolescent brain injury patients. In thenext phase, the scale and guidelines willbe extended to a younger age group, andcomparable success with this populationis anticipated.

AcknowledgmentsThe author thanks the members of the

Adolescent Brain Injury Task Force:

Amy Chin, OTIPT; Elana Cornelius,OTIPT; Marian Gordon, Speech Pathol­ogy; Tracy Mitchell, Child Life; WilliamSeidel, Neuropsychology; Elaine Sasa­ki, Case Management, Sarah Swann, So­cial Work, and Barbara Gold, School.

Sharon Chinn is a nurse administrator inbusiness development at Childrens Hospi­tal Los Angeles (CHLA). At the time thisarticle was written, she was the operationsmanager of the rehabilitation program atCHLA. Address correspondence to SharonChinn, Childrens Hospital Los Angeles,4650 Sunset Boulevard, Mailstop 87, LosAngeles, CA 90027.

226 Rehabilitation Nursing' Volume 26, Number 6' Nov/Dec 2001